Wednesday, December 31, 2008

Last week, I was due to receive all three of my treatments on Hanukah: Herceptin, Taxol (plus four premedications), and Zomera/Denosumab. Though I let everyone know that I did not want to come for chemo two days running during Hanukkah, I knew that possibility existed.

When I found out that I also needed to do a full body X-ray (which is done every 25 weeks for the Zomera/Denosumab study and takes around 20-minutes) my hopes for one chemo day flickered, then waned.

But, it was Hanukah, after all.

My hope flickered again, then got stronger, as I noticed that everyone was doing their best to try and help me finish all my treatments in time.

In the end, I finished all of my treatments in one day!

When I got home and hugged my kids, I was overwhelmed by gratitude.

I wanted to do something to show my appreciation to the oncology staff.

I decided to make a "Certificate of Appreciation." It was a bit challenging for me to make it in Hebrew, especially since I wanted the wording to be an accurate reflection of how I felt. But I did it.

Then, I left it at home this Tuesday, when I went in for my next treatment (just Taxol).

I thought I would at least say thank you to the staff, but I got caught up in the details of the day and did not remember until I was finished and on my way out. I realized that I could not leave without expressing my thanks.

By this point, I know that things don't happen on their own in the chemo ward. There is so much that goes on "behind the scenes." The nurses work especially hard to make sure that we receive our treatments and the care that we need.

So I went back, and found the four nurses who helped me so much the week before. One by one, I told each nurse how much I appreciated the efforts that she made to ensure that I finished in one day.

Two of the nurses were clearly moved, much more than I expected. Their reaction made me realize how powerful appreciation can be.

I have been in chemotherapy for almost a year and a half now. Most of these nurses have been my health care providers and support team for the entire time. I was not always appreciative of their efforts or their bedside manner.

In the beginning, I was confused by often contradictory behavior. I could not understand why the same nurse could be so kind one moment and so impatient the next.

Over time, I learned to recognize when the nurses were busy, rushed or pulled in a thousand different directions. I learned to ask questions during the quieter moments, like when the nurse is opening my port (and only the two of us are in the room), or at the end of the day, when most of the patients have already left, and the ward is calmer and quieter.

I also learned that the nurses know all about us. They do their homework, they talk to the doctors, and they make sure that we get what we need, even when they are understaffed, overworked, and underpaid.

And they are a tremendous source of knowledge and support.

Most days, I just take it for granted that they will do what they need to do. But, last Tuesday, I could not help but notice that every one of them was really trying to accommodate my needs. I felt like I had an entire support staff taking care of me.

One of the nurses, when I thanked her, looked at me blankly at first. "For what?" she asked. When I told her, she laughed and said, "That's history; it's already forgotten." After all, they have done so much more since then.

"Well, I did not forget," I answered back, laughing along with her, "For me, it was a big deal."

Tuesday, December 30, 2008

It was difficult to say goodbye to the many friends who only come to chemo on Tuesdays.

When I arrive, so many friends great me with smiles and hugs. They know me and I know them. I will miss seeing them every week.

Transitions are difficult for me.

That is one of the things I learned about myself from my son. We both feel comfortable with the familiar.

In time, I am certain that I will build similar relationships on Thursdays.

Still, those relationships take time and energy to build and foster.

I know that I have helped to contribute to a more positive environment in the chemo ward.

Over this past year and a half, so many people (patients, patients' families and friends, nurses, etc) have told me how much my smile helps to brighten their day, and how much they miss it when I am not there.

Part of me feels that maybe God wants me to spread joy and happiness on Thursdays as well.

If so, that certainly gives a higher meaning to changing the days.

Feeling that there is a purpose also mitigates some of the stress and resentment. I do not want to change days. But, if there is something good that will come from it, then that makes it easier to accept.

Monday, December 29, 2008

OK, so I admit it, if it were up to me, I would not go shopping. BUT, I knew that my daughters were waiting for this opportunity, and I knew that they really needed to go with me. SO, I psyched myself up to go.

My plan was to sleep late (until at least 9:00), then wake up the girls, have breakfast together, and then hit the outlets. If we were lucky, we would finish early and come home in time to have a nice dinner together. Maybe MD would even be back in time to join us.

I woke up too early, at 8:00. I thought I would just do a few things, then go back to bed for another 1/2 an hour or so. But by 10:00, my youngest was already up and there was no turning back. We woke up my eldest around noon. The revised plan was to have lunch and be on our way.

One thing led to another and at 1:00 I was not sure if I wanted to go. I was irritated about several things (including the girls' sudden demand that we also go to the mall today, since "everything is 50% off") and I was tired. Both girls were upset. But it was the tears of my youngest, as she cried "you promised," that tore at my heart. She wanted to go yesterday, despite her fever, and I promised her we would go today.

Then, my girls gave me the following note:

Dear Mommy!going to the mall is very important to Y and A. (us)its not every day that all three of us are avelable to hang out together!

we know that its not so easy for u to hang out shoping for a long time, but "אין דבר העומד בפני הרצון"!!!

we wold like to ask you to please do this for us. we will be soooooo graetfull!!!

we know its' a big reaqeust but we really need it.

think of it as: "hanging out with your two lovelly dawters"!!! ☺ such a cool mom!

please please please please please... (x100)

♥love♥ y and a. (us)

(note the please "with a cherry on top)

I do not know if I can fully convey the sweetness of their note. Needless to say, I took them shopping. It was almost 3:00 by the time we entered the first store. (I had never been to these outlets before, so it took some time to find them)

We went to several outlets in Givat Shaul (Tamnun, Lord Kitch, Topline). We found almost everything that Y needed/wanted. But the stores did not have most of what we needed for A.

By this time, I was tired, cold, and hungry. We stopped in a small diner, and split two bowls of hot onion soup. It was just what we needed!

We went across the street to another store, "HaKol in one" (all in one), which did not have the items we wanted, but did have several other items that the kids needed.

By now, it was 8:00, and I was finished. I knew that the kids would understand if we went straight home. But I could not forget the image of A sitting and waiting patiently while Y searched for an hour for a skirt she liked. I just could not go home without trying to get A what she needed.

So, I took them to the mall. We did manage to get A a few items that she needed. To our dismay, though we went to several stores, we could not find her a pair of jeans (neither pants, nor skirts. Even if she would have foregone the flared bottoms, all the jeans were hip-huggers. We all agreed that the hip huggers are too low, and are immodest from behind when you sit down. None of the stores had "normal" jeans, that come up to the waist. We also could not find a simple jean skirt, that was short, but still covered the knees. In Givat Shaul, the skirts that fit her were too long. And in the mall, the skirts that fit her were too short.

At 9:30, I called it quits. I apologized to A, but I did not think we had anything to gain by hitting every store in the mall. Clearly, the popular styles were not for A. I was done!

On the way home, I made sure that A knew that I had gone the extra mile for her. I knew she was disappointed. I wanted her to know that we went to the mall for her, and that I appreciated her. I wanted to make sure that she did not feel that she was any less important. A did not complain, but I knew that she was sad. I wanted to help her recognize what she did get, not just in terms of the things we did purchase for her, but also in terms of the efforts we put into finding what she needed (even when we did not find them).

We arrived at home at 9:45. After greeting MD, who we had not seen for two days, we sat down to supper and then the girls got ready for bed.

Just before they went to bed, they came to me with another note:

Dear ima!Thank you soooooooooo much! we are sooooooo greatful!We know it wasnt easy for you and we wanted to thank you for doing in anyways!!!We love you very berry much!love love love (x100)y & a!(there were several pictures of happy girls all over the note, plus lots of hearts)Both girls had already thanked me, so it was a very nice gesture. I hugged them again. Then they went to bed.

A few minutes later, A came out of her room. She wanted to tell me how much she appreciated the time we spent together today. Then she flashed me a beautiful smile.

Mother: Does not relate to the clothes thing, does not care about fashion, HATES shoppingAdd to the equation that child #1 does not feel so good, child #2 is majorly sick, and mommy is tired.... Sounds like a recipe for disaster to me!

So, mean, old mommy put her foot down and insisted we go tomorrow.

Logistically, I would have preferred to go today, but I cannot see going shopping with 1 1/2 sick kids!! No matter how much they want to go (and insist that they will behave nicely!)

Unfortunately, I do need to take them because:a. they really do need new Shabbat shirtsb. if I take them, we will go to an outlet and pay lessc. this way, I have at least some influence about the clothes they wear

Thursday, December 25, 2008

My amazing fix-it man, who can put a band-aid on any appliance and make it work another few years, advised me to get a new one. This time, he says, it is not worth it. The machine needs new lugers, a new heating element, and who knows what else. It would cost almost as much to fix my machine as to buy a new one.

That is only partially true.

I could spend the same amount and get a cheap new machine. But a good machine will cost at least twice that much.

More difficult than the outlay of money, is finding the time and energy to do the research for a new machine (which brand, where to buy it, etc.)

Until now, we have been able to avoid these decisions. Our last two machines were "inherited." (one from friends who left the country, and another from friends who were "upgrading")

When you get a machine for free, you just take whatever there is. No thoughts required. That works for me!

A few days ago, after I had gone through all the efforts to make sure she could attend the two day seminar, my daughter, at the last minute, wanted to know how bad it would be if she decided not to go. I decided not to force her, but I did explain some of the ramifications of not attending. In particular, I made sure she understood that when someone (like her mother) makes efforts of her behalf, and then she disregards those efforts, that person is less likely to make efforts on her behalf in the future. "That means I have to go," she declared, dejectedly.

Now, the truth is that her mother would probably make those efforts again. But the other people, like the head of the program, might not. And it is important that she value the efforts made by others on her behalf.

So, though I knew it was the right thing for her to go, I worried that she would not get the most out of it, especially if she did not have the right attitude.

Arriving late on the day of departure did not help. (Read about it here)

With a little trepidation, I called later that day, to check up on her. She sounded buoyant and energetic and did not really want to spend time on the phone talking to her mom. That was a good sign.

I did not hear from her again, until today, when she wanted to know if I loved her enough to pick her up....

Unfortunately, both Moshe and I were not feeling well today. So she had to take a bus home... in the rain.

Sill, given the way she bounded through the door, and gave me a non-stop play-by-play, it is pretty clear that she is glad she went. (It helps that she told me as much)

For now, I am moving all my swimming classes to Monday. I think everyone can do it.

The big question is whether or not my son can do it.

He has sayarut (scouts) on Mondays. The madricha (counselor) cannot switch days, but she did agree to meet earlier. The logistics are tight, but he should be able to get to swimming on time for lessons.

It will be a bit stressful, until I am certain that everything is working out.

Wednesday, December 24, 2008

I had a pretty lousy night. I woke up several times from acid reflux, caused by the chemo.

Instead of sleeping in, I was up at 8:00. (early for me, even on good days)

On my way to the bathroom, I noticed the light was off in Y's room. She often forgets to turn off her light when she leaves the house. I was glad she remembered. But, what if....

On a whim, I peeked into her room, to make sure she left all right.

AAAACKKKK!

There she was, still sleeping soundly, under her covers!

I quickly roused my daughter, and told her the time. (She had set her alarm for 6:00, so she could be out of the house by 6:45, in order to catch two buses and arrive on time, at 7:30!! The alarm did not go off.)

"Come on," I rushed her, "I'll take you now!"

I threw a skirt on over my pygamas, put on a scarf, grabbed my coat and was ready to go.

Then, a miracle occured: my teenage daughter was ready to leave the house within five minutes of waking.

On our way out the door, I called the person in charge of the seminar, to make sure they had not yet left. In my experience, groups like that never leave within half an hour of the designated time and often much later. Still, I didn't want to get there and discover they were gone.

He said they were about to leave, but would wait for us. "We'll be there in ten minutes," I told him, dashing out the door.

Y did not believe we would make it there that quickly, but I figured that it was "early" for a morning with no school. Sure enough, we made it before they were ready to leave! The girls were still loading the bus.

"Do I love you enough to take you in the morning?" I asked my daughter.

Tuesday, December 23, 2008

Today, for the second time since I started the new chemo regimen, I was scheduled to receive both Herceptin and Taxol and the bone drugs. The last two weeks, I only got Taxol, and I finished really late both times. I did not want to come twice to the hospital, like I did the first time I got both treatments (and I did not need to get the bone drugs then).

So I told everyone (my doctor, the nurses, the research staff) how important it was for me to get both treatments today, so that I would not have to come in a second day during Chanukah. My kids are home from school and I want the time with them!

Everyone helped. I can't begin to list all the people who went above and beyond the "call of duty" to make it work.

I arrived at 8:40 (early for me), and I finished chemo around 4:40. Most of the staff left by 3:00 (it is Chanukah, after all). Even the nurse who was on duty until the end was patient and pleasant.

I got home after 5:00 and I was exhausted! (Also still a little woozy from the antihistamine) I wanted to eat a bit, light candles and go to sleep. Ha!

My eldest daughter wanted my help; so I dropped everything to help her. What I thought would take just a few minutes of problem solving, revealed a much greater problem (which she had created during a "teenage moment" yesterday). Though I was still upset with her about that particular "teenage moment," I tried to help solve the current crises. However, in the middle, as I was asking for her help to solve her problem, she had another "teenage moment." I had already solved the major problem and was now working on the original, relatively minor, problem (she really wanted a ride in the morning, at 7:00).

At first, I handled myself well. I stopped what I was doing and calmly told her that she behaved inappropriately to me and I would no longer be helping her to solve this particular problem (it's not like there was no way for her to get where she needed to go; she could take a bus).

Had I stopped there, she would have been upset, but I would have done the right thing.

Unfortunately, my kids know how to "suck me in!" Within seconds, I was dealing with a whiny and demanding child.

That is when I lost it.

Boy, did I yell at her! All my frustrations about yesterday's incident, combined with today's incident, combined with the fact that I was exhausted and still taking care of her even when she deserved to learn her lesson the hard way, and I was just fed up with her attitude!

My friend, who was in the other room, heard me shouting and high tailed it out of there! Oops.Well, now she knows I'm human, and yell at my kids sometimes. (I know it might be hard to believe, especially for all you perfect parents out there, but I can be pretty scary when I am a raging lunatic mom)

I tried to regain my composure and talk reasonably with my daughter, but everything that came out of her mouth just agitated me further! Finally, Moshe came out and sent her to her room.

Later, much later, he went in to talk with her.

Then she came out to talk with me.

We were both much calmer and had a really productive conversation. Every time my daughter slipped into "teenage mode," I miraculously managed to maintain my poise and refocus her attention on the main issues at hand.

When we finished, she went off to do the things she had to do. I promised her that when she was done, we could spend a few moments together.

When she came back, she was affectionate, but still a little irritating. Eventually, I got her to smile and even to laugh.

"Why won't you drive me in the morning?" She asked, for the umpteenth time, looking up at me with her puppy eyes.

"Because I do not love you enough," I answered, exasperated.

"Can you love me more," she implored.

"I already do," I answered, kissing her on her forehead.

Y: "A hundred times?"

Me: "A million times"

Y: "A googol?"

Me: "A googol of googols."

Y: "Enough to take me in the morning?"

Me: "No."

Y: "Can you love me more?"

Me: "Yes."

Y: "A lot more?"

Me: "To the moon and back!"

Y: "Enough to take me in the morning?"

Me: "No."

Suddenly Moshe's voice interrupted us: "Doesn't she have to get up in the morning?"

I looked at Y with "that look" that said "you are getting me in trouble with your Abba again!" Then I mouthed to her "get into bed" and called back to him: "she's already in bed."

"No I'm not" she called back, laughing, as she ran to her room.

Then she stopped, turned to me and asked “Will you sing to me?”

I was so tired. But, how could I say "no?" We had had two very bad fights in as many days, and now she was asking me to sing to her, something I have not done for a very long time.

I got up and accompanied her to her room. Then she crawled under the covers and stuck her hand out, for me to hold.

As I sang to her, she closed her eyes and smiled that peaceful, beautiful smiling of sleeping children.

When I finished, we hugged each other.

"I love you," she said quietly.

"I love you so much," I whispered back.

Then, just before I walked out the door, I paused. "No," I answered the unasked question one final time.

Monday, December 22, 2008

Had I been "normal," I would have stood the entire time. But my back hurt. So I sat down.

It might not have been so great for business, but a gal's gotta do what a gal's gotta do.

Still, mostly I stood.

I pretended to be normal, like all the other vendors.

I smiled all the time, and displayed my wares to anyone who stopped long enough to look and listen.

I chatted with friends, and caught up with acquaintances.

I greeted several children who were/are my swimming students.

I gently asked the many curious children with their cotton candy and their sufganiot (jelly donuts) to "please be carefull" not to touch things with their sticky fingers.

The atmosphere are the fair was really nice. I met up with lots of friends.

The guy at the table next to me was very friendly, and had a great smile. He looked so familiar, but I did not recognize his name. I discovered that he is the brother of a friend of mine. No wonder he looked so familiar.... they have the same smile!

When the fair finally over, I packed up my things....slowly....

Somehow, I always seem to be slower at packing up than everyone else.

My friend's brother offered his assistance. There was nothing he could do to help me pack, but I jumped at the opportunity to recruit his help in bringing my things back to my car.

While he was waiting for me to finish packing my last bits, I joked about how slow I am.

"I have a good excuse," I blurted, without thinking.... "chemotherapy."

Blank stare.

"Why?" He blurts back, not thinking any more than I did.

Duh.

"Because I have cancer."

Even as we were having this surrealistic conversation, I wondered why I did it. Why spoil the illusion that everything is normal?

Working these fairs is fun, but it is hard work, even when you are normal.

I am not normal.

At the end of the day, I was REALLY tired, and more than a little proud that I had managed to pull it off.

I guess I wanted the recognition.

I wanted someone to say, "Wow, I never would have guessed!"

I wanted someone to know that it was hard for me, and I did it anyway.

Sunday, December 21, 2008

It is the first night of Chanukah, and we could not find even five minutes with all the kids home at once.

Is there a way to slow them down once they hit adolescence???

MD did not get home from Ofek (afternoon program for gifted kids) until after 7:30.

A left for gymnastics at 7:00, and came home at 8:30.

Y left for gymnastics at 6:00, breezed back in at 7:15, and then out at 7:30 to go to her high school Chanukah party. After the party, she and all the other girls in her class are going to one of her friend's for a sleepover party. It is good to be young!!!

PROUD PARENTING MOMENTS:

1. Over the past few weeks, Y asked me repeatedly to call about "madatzim" ("madrichim ze'irim" - young leaders) and help her figure out which group she will be in this year. I kept forgetting, and tonight she got upset because it was "too late" for her to attend the Chanukah seminar. I apologized and told her I would call right now. Convinced she would not be able to go, she declared that she "did not want to go anymore, anyway!" Despite her protests, and because of more than a little guilt, I called the person in charge. Thankfully, I worked everything out for her. You should have seen her smile!!! Forgiving everything, she told me: "You're the best!!!" and gave me a giant hug. Sometimes it is nice to work miracles.....

2. Y was eager to get to her school on time for the party. As soon as she finished teaching gymnastics, she rushed home, missing her own workout. She got everything together in a flash and was ready to zip out the door. I could see that she was stressed, and offered to wait for the bus with her. Without thinking of herself, she responded "But you'll be cold." I asked her if she wanted me to wait with her. "I don't want to be selfish," she responded, not answering my question. "Do you want me to wait with you?" I asked her again, several times, before she admitted that she would really like that. So together, we left the house and I waited with her until the bus came. Then, as she was about to get on the bus, she realized that she left her wallet at home. Crushed, she watched the bus pull away.

3. The next bus was in another 15-20 minutes. Y found her wallet and then did not know what to do with herself. She was hungry and anxious. She would have just grabbed something junky, but I helped her find something nutritious to eat. Then, again, I offered to wait with her for the next bus. This time, she immediately asked for my company. As we were waiting for the bus, I could tell she was frustrated. I held her hand, and listened. Had she known that she would be leaving this late, she would have stayed for her workout at gymnastics. It was hard to find the "right" things to say. I wavered between empathizing, making jokes, and just reassuring her that everything would work out all right. Finally, the bus came. She flashed me a shy smile as she got on the bus. "You're the best, Ima."

Y was beyond tired, having stayed up all night on Thursday night with her youth group.

MD didn't feel well either, and easily went to sleep early.

A would have happily curled up on the couch and gone to sleep there. But, these days, we prefer the kids sleep in their beds. I invited A to cuddle with me. She jumped at the chance, and willingly went to sleep in her own bed after that. She tries so hard to keep up with the big kids, but she is still a "little girl" in many ways.

You might think that with everyone going to sleep so early, we would get up early in the morning.

Wednesday, December 17, 2008

For months now, friends of mine have been inviting me to come out to a movie or to some sort of "girl's night out."

I have either been too busy or too tired!

Tonight, we finally got together for a "girl's night in!"

My friend, RD, who lives a few doors down from me, picked me up and we drove to LM's home. (These days, I rarely go anywhere at night unless I can get a ride)

LM made an awesome dessert: Banana's Foster(she made a really simple recipe: in a saute pan, melt a bit of butter, then added brown sugar and stir. When sugar is dissolved, add Baccardi rum and sliced bananas and heat for several minutes, until the bananas puff up. Spoon the hot sauce and bananas over Ben & Jerry's vanilla ice cream) YUMMMM.

Then we had tea and popcorn while we watched Intolerable Cruelty, a parody about divorce lawyers. It was a silly, and fun, romantic comedy with a twist, and we all laughed a lot. Just what the doctor ordered!

Afterwards, we hung around, chatting about kids, schools and life in general.

Not to mention the various and sundry additional information, like who is willing to accompany the class on class trips, who is on the class parent's council (va'ad horim), etc.

Because we live in Israel, all this information is BOTH in English and Hebrew!!!

(If I was really good, I would also have it in French. But when I was in high school, my dad convinced me to learn Spanish instead of French because it is more practical. Not in Israel!)

Each year, at the beginning of the school year, I spend significant time and energy updating everyone's information. You might think this would not be so difficult, after all, how many people move each year? But you cannot imagine how many parents keep changing their phone numbers, and mobile phone numbers, and emails, and second emails, and...

You get the picture??

It is so much work, that for several years now, the school distributes MY LIST to the teachers.

Because no one else is crazy enough to put in all that effort!!!

NOW do you understand how stupid I feel??

I had the one and only master copy, with all of this year's corrections and additions!

Only after I had erased the file, did I discover that I had never sent it out to all the parents!

Apparently, I sent out my daughter's class list, but not my son's!

So I spent HOURS, when I should have been fast asleep in my bed, searching through old files and old emails, and doing my best to put together the updated list.... AGAIN!!

And then, when I was finally all done, I emailed the new list, along with a letter requesting that the parents please review their information again and send me, AGAIN, any updates and/or corrections that I might have missed.

So now ALL the parents of the ENTIRE CLASS know just how SCATTERBRAINED I really am!!!

I added two new columns:Child's Mobile PhoneChild's Email

You think the new requests will fool them into thinking that I am just being REALLY THOROUGH?!?!?!

Monday, December 15, 2008

For the first time in six month, I am taking less pain killers than I was a week ago.

I find myself going for hours at a time with no medication. That hasn't happened for the longest time.

As of a week ago, I was taking two Optalgins and two Algolysins every four hours, and I could barely wait for the next dose. I knew that it would not be much longer before I had to move up to the next level in the world of pain killers (from Algolysin to Percocet).

When I need to take pain killers, I still need two Optalgins and one Algolysin, but even that is less than I was taking a week ago.

I have had only two doses of Taxol, so this is certainly not a definitive indication that the chemo is working.

Saturday, December 13, 2008

We had not planned to be away for so long, but that is just the way it worked out.

Since we kept going away, much of the weekly tidying up was.... delayed. So, this week, we had a lot of tidying up to do! Thankfully, we had a freezer full of Shabbat meals that friends had prepared, so we could focus on the bare necessities (like clearing off the mountain of papers that had piled up on our Shabbat Table, and the loads of laundry that had piled up on our couches).

It was quite clear that it was good for us all to be home, especially the kids. There was a lot of laughing over dinner. Our kids provided their own unique entertainment by pretending to phone each other with prank calls. Why these things make them laugh so much is beyond me....

Example:child 1: "ring, ring"child 2: "hello?"child 1: "the number you have reached is not available, please try again."**hysterical laughter**

After a while, even we had to laugh. The ridiculousness of it all was just so funny.

At one point, A's prank calls involved "inviting" pizza. (in Hebrew, the word for "order" is the same as for "invite"). She kept repeating the mistake, even after we corrected her. So, finally, Moshe "called" and said (in a dopey voice) "Hi, I am the pizza, I am here for the party."

It was just so good to laugh and be together.

Towards the end of the meal, I had to lay down and rest. The new drug (Taxol) makes me really tired. I just lay down for "a few minutes" on the couch....

I woke in the middle of the night, and could not fall back asleep. I woke up Moshe (by mistake) and we talked for a while. Eventually, I relaxed enough to fall asleep.

We all slept in, in the morning. Nobody made it to shul (synagogue). I hung out with A for a little bit. Then I had a quiet breakfast with MD. Then MD went to spend some time with A. I woke up Y, who joined me in my room. We hung out in my bed for a while, talking about this and that. I had some time alone with each of the kids. It was good for us to spend the time together.

When Moshe finished davening, we all sat down to lunch. In the middle, I took a short nap on the couch, but I woke up for dessert. (I was going to skip dessert, but the kids persuaded me to stay)

I had such a good time with my family, but I needed to sleep. As soon as lunch was over, I crashed.

By the time I woke up, Shabbat was long over.

Tonight, for the first time in ages, we all sat down to family night Star Trek.

Lately, Y is out every Saturday night with her youth group. She catches up on her own, but it is not the same as watching together. Tonight, we started so late that Y had already returned home.

It was really great watching all together.

This Shabbat, we really spent much needed time together with just our family. It was so good to be together, in our own space, just enjoying each other's company.

Thursday, December 11, 2008

Inasmuch as anyone can like getting chemo, I like getting chemo on Tuesdays. It works for me.

Too bad for me. Tuesdays does not work for my doctor. So, he's moving all his Tuesday patients to Sunday. If not Sunday, then Thursday. Those are the choices.

Sundays or Thursdays.

Yuck!

Sundays, I have a shiur (class) that I love and that I do not really want to give up. Moreover, if I get chemo on Sunday, I will be tired for most of the week.

Thursdays, I teach swimming. And, if I get chemo on Thursdays, I will be really tired over Shabbat.

Tuesdays was good. If I had to lose a day, at least it was in the middle of the week, so I could do things before or after. Though I was always tired after chemo, I worked myself into a routine where Wednesdays and Thursdays were "easy days." Fridays and Shabbat were also fairly low key, with a lot of sleep scheduled in. It might not have been perfect, but it worked for me.

And I built everyone else's schedule around mine.

Now, the deck of cards is collapsing.

Logistically, it would be easier for me to switch to Sundays. I even have someone to pick up my kids on Sundays (If I don't pick them up on Thursdays, they will have to take a bus). But I would be giving up a lot (my shiur, my week). So, I would rather get chemo on Thursdays, even if it means I am extra sleepy on Shabbat.

The problem is that I teach my kids swimming on Thursdays. The prospect of rearranging my kids' schedules makes my head hurt! But one of the main reasons that I teach swimming is so that I can teach my kids!

I have been avoiding dealing with this, but it is not going to go away.

I only have a few weeks, until the end of December.... The new schedule starts in January!

It is so complicated.

I know it won't work, but I like Moshe's solution the best.

Moshe suggested I...

Use The Force.

Doctor: I’m going to have to switch you to Sundays. There’s no way around it.RivkA: (waving her hand slowly) You don’t need to switch me to Sundays.Doctor: (glazed look in his eyes) I don’t need to switch you to Sundays…RivkA: I can stick with Tuesdays.Doctor: (still glazed) You can stick with Tuesdays…

Tuesday, December 9, 2008

Can now RECEIVE, but still cannot SEND, email. AAARRRGGGGHHH!!!!(I'm having a Charlie Brown moment!!)

Quick update of today (will have to catch up another time):

Chemo in the morning -- I cleverly thought to have a friend who can work on her laptop join me and work for most of the time, while I slept. Since there were MANY unforeseen problems today, she ended up being a TREMENDOUS help!! And she still managed to get a ton of work done. (yay!)

TROUBLE with my PORT -- the IV drip wouldn't work. they tried switching the port tubing (i.e. sticking me with another needle), switching the IV tubing, sending my to x-ray the port, etc. All this, AFTER I already received over half the dose of Phenergan and was woozy and sleepy. They kept waking me up!

Eventually, they decided to inject urokinase (blood thinner) into the port. They wanted to do that and then send me home, to come back tomorrow! No way!! I was already doped up, and had completely lost the day anyway. Not to mention that my friend (who it turns out is really an angel!) was available to help me ALL DAY today. Whereas it would be a nightmare to do it tomorrow!!

In my stupor, I tried to convey all this forcefully enough to enlist their assistance -- I did not want to be too forceful (unlikely, since I kept falling asleep in the middle of our conversations).

I guess I succeeded, because some time after they gave me the urokinase, they moved my bed to the regular oncology ward, where the nurses there gave me the preparations and chemo (Taxol). The nurses put me in one of the isolation rooms, so I was there by myself (with my friend).

I did not care where I was as long as I could sleep!!

I woke up around 6:30 pm. My friend managed to find me some dinner (not bad for hospital food!). I was supposed to be at my kids' school for Parent-Teacher night, but I had at least another 10-15 minutes left. *sigh*

We talked to ALL the teachers who were there, and also the guidance counselor (yoetzet) and the principal. Overall, the kids are doing well!! (more on that another time, b'li neder(no promises))

Then we left the Rova(the Jewish Quarter of the Old City, where my kids learn), at around 10:30 pm, and stopped off at my sister's to pick something up.

Then Moshe dropped me off at home, and he went to work to finish putting my medical files in digital format.

I wanted to go straight to sleep, but MY KIDS WERE STILL AWAKE!! It was ELEVEN O'CLOCK AT NIGHT!!

I wanted to just sing to them, but they were so anxious about what their teachers said.... So I went over what everyone said (good for my kids, not-so-good for me, but still the "right" decision). Then, AFTER MIDNIGHT, I sang everyone to sleep. (Well, not to sleep, but relaxed enough that they all went to sleep without asking to read!!)

Then I had a quick talk with Y, who was having a rough day and just needed someone to listen.

Then, I decided to "just quickly look at my email," now that it was working again... BIG MISTAKE!!

An hour and a half later, exhausted, and out of my mind, I noticed that EVERY SINGLE EMAIL BOUNCED BACK!!!

I give up!!! The emails will wait for tomorrow!

Moshe is still at work trying to make my medical files accessible on the web!!

Friday, December 5, 2008

I've been tagged by Hadassah Sabo! YAY!! I have not been tagged since I was, like, seven!

Here are the rules:1. Link to your tagger and list these rules on your blog.2. Share 7 facts about yourself, some random, some weird.3. Tag 7 people (if possible) at the end of your post by leaving their names as well as links to their blogs.4. Let them know they have been tagged by leaving a comment on their blogs.

Seven facts about me:

1…I was really shy and extremely quiet in elementary school. (hard to believe, but true!)

2…I started teaching swimming when I was 12! (I've been teaching swimming for 30 years!)

3…I attended the A-School (Teaneck's Alternative 1 High School) and graduated with the most college classes taken by any high school student in the history of the A-school (you bet I'm proud!)

4…I have a green belt in Judo. (don't mess with me!)

5…I had a pet deer that lived in the forest and came when I called. (fantastical, and true!)

6…My picture is in a book. (leading a sheep along the streets of Jerusalem)

7…I LOVE games!! (come over and play sometime!) (WARNING: I can be quite competative! I am a good loser, but I like to win!)

Thursday, December 4, 2008

So, I contacted Roche and it is true -- they provide the fourth bottle for free.

Not only that, but if I purchase the Herceptin from Roche, it costs 10,895 NIS per bottle (saving 326.85 NIS per bottle).

BUT, this afternoon, Roche called and told me that the head of the pharmacy department at Sha'are Zedek will not allow Roche to supply the Herceptin without charging an additional fee.

The Roche representative informed me that this has been the policy at Sha’are Zedek for years, leaving me with two options: either purchase the Herceptin at the higher rate, or switch hospitals (other hospitals do not impose an extra fee on patients who are purchasing their medication privately).

Switching hospitals is obviously not an option.

Before I take any further action, I want to verify this outrageous allegation. If true, it is absolutely immoral.

Wednesday, December 3, 2008

Even though my port was still open from yesterday, it was still a long day. I waited almost an hour for the Herceptin to arrive in the department, and then it took almost four hours to receive the dose. When I tried a faster drip, I had chest pains, so I had to slow it down. (I wanted to see if I could take the drip faster, so I would not have to come in twice on Hanukkah -- which is the next time I am due for both Taxol and Herceptin)

Anyway, I was definitely more relaxed than I was yesterday!

Later in the day (after I got home), I heard that if you purchase the Herceptin directly from Roche Pharmaceuticals, they provide the fourth dose free. I hope to confirm this tomorrow.

Why is it so difficult to find out this information in advance???

I was so tired when I got home, but I could not rest. I had to feed my kids, then take my son to an appointment. Then, when we got back home, I had to feed my kids dinner and get them ready for bed.

Moshe was still at work, because he is putting together a file of my medical records in digital form.

My son went to bed early. When he realized how early it was, he wanted to get up. I suggested that maybe, if he was already reading in bed, he was tired and needed to rest. He said he wanted to make use of his time. I said, "that's a great idea, you can clean your room." He answered "I want to go on the computer." (surprise, surprise). I reminded him that he was not allowed on the computer at this time, and suggested, again, that he could use this time to clean his room. You never saw a kid pick up a book so fast!

I tucked in my son and... left for a Va'ad Horim (PTA) meeting at my daughter's high school. I felt a little more ba'inyanim (on top of things) at this meeting. (I know it's hard to imagine, but I was a little overwhelmed by the powerful presense of the other parents at the first meeting)

By the way, my late night talk with my daughter last night was mostly about how she LOVES her high school. She's been there for only a few months and already feels like she can do ANYTHING she wants! It is absolutely wonderful for me to see her so happy.

Even though I was tired, I had a really nice chat with one of the moms after the meeting.

I finally arrived at home at close to midnight. Moshe was (is) still working on my medical file. I made sure my kids were all tucked in and kissed them goodnight. They are so beautiful when they are sleeping!!

Tuesday, December 2, 2008

First, I overslept. I wanted to arrive early, and instead I arrived late. (It was not that bad, we arrived at around 9:20, instead of our usual 9:00)

Then, the nurses told me (and my doctor) there was no way that I could receive both Taxol and Herceptin on the same day because I would be there for over 10 hours (the oncology day ward is not open that long). I would need to take one drug today, and another tomorrow.

Great. (Not)

Today was the deadline day for taking Herceptin without a loading dose. Nevertheless, the nurse who handles prescriptions (who I highly respect) recommended starting off with Taxol, so there would be a full week in between doses. The doctor agreed with her logic, and thought the difference in waiting one day for Herceptin was insignificant.

The doctor explained that the delay would not negate the affect of the Herceptin; at most it would take longer for the Herceptin to build back up in my system. My concern was that the delay might affect our ability to evaluate the efficacy of the drug. I was especially unsettled because the Herceptin is being paid for by private donations, and I am highly sensitive about not wasting someone else's money.

The deliberations made me even more anxious. My doctor left the final decision was up to me; we would do whatever made me feel most comfortable. I did not know how to decide. Moshe suggested that, since I am not a "bureaucratic statistic," we follow the doctor's and nurse's instincts. I felt really stressed about the decision. The doctor looked directly at me, and gently suggested I relax. I looked right back at him and said "I am very anxious."

"I know," he responded, softly, "Relax. It will be OK."

He did not diminish my concerns. He acknowledged the many facets of this issue, and gave me the space to choose whatever path I preferred. I focused on my breathing and agreed to take the Taxol first.

When I went to open my port, the nurse took one look at me and asked "where is your smile?"

Afterwards, when I went to wait with a cluster of the "regular" ladies, there, too, several women asked me what is going on.

I did not realize my feelings were so easily displayed on my face.

I have been coming to chemotherapy for almost a year and a half. I often receive heart-warming comments welcoming me. After not seeing me, during the chagim (holidays), one woman told me that she really missed me, that I am like a ray of sunshine.

Today, when everything weighed so heavily on my shoulders, (the finances, starting a new drug, the overall uncertainty), I finally understood that I really did bring joy and laughter to the chemo ward.

One of the nurses came to tell me that I would need a bed. The head nurse had told me that last week, so I already staked out a bed when I first arrived. (another reason I wanted to get their early was that I know that beds are often taken quickly, and I did not want any hassles. "The early bird gets the worm" and all that... Thank God, there were several beds available when I arrived. I was even able to choose a bed in a room with two other women). The nurse hooked me up, and led me to the bed.

I was getting the first of three medications to prep me for the Taxol. The first was Fenergan, a super-duper antihistamine that totally knocks you out. The second was something to protect the digestive tract and the third was something to prevent nausea. Only after these three infusions would I receive the Taxol.

I had brought a book, but realized that the Fenergan made it impossible to concentrate on reading. I noticed a TV, thought I would watch for just a bit, to relax. The sound was off, as Moshe adjusted the TV channels. When we found a program I liked, we discovered there was no volume, even when Moshe raised the volume to maximum. We tried to find a program that I could follow the Hebrew subtitles (not easy for me, at all). When Moshe flipped through the channels again, we discovered that some of them did have sound, and maximum volume was LOUD!! Moshe immediately lowered the volume, but not fast enough! My roommates started yelling at us! (So much for relaxing!) We apologized profusely, as Moshe continued to mute the TV. Then, slowly, Moshe started raising the volume. At that point, one of the ladies (the daughter a patient), started yelling again! She needed complete quiet so that she could study! Moshe was even more taken aback than I. Very quietly, he asked me to ask a nurse to deal with this. When I related what happened to the nurse, she insisted that patient's needs come first. So Moshe raised the volume just barely enough for me to hear. The woman then started talking loudly with her mother, but I couldn't understand what she was saying since they spoke in Russian. It was probably better that way. (What was that about relaxing?)

I waited for the room to quiet down (I realized that if I raised the volume, they would just talk louder), when one of the volunteers from the Yuri Stern Foundation came in to offer me a massage (reflexology). By then, I was already feeling slightly woozy. When I started to get up, to go into the massage room, she said she would treat me in the bed I was in. Yeah.

We spoke a bit, before she started, and the subject came up about my teaching swimming. I could feel myself transform, just talking about it. The tension left my shoulders and I smiled. I could feel the spark return to my eyes. After a few minutes, she and I smiled. I could feel the spark return to my eyes. After a few minutes, she left to get her things.

She came in, closed the curtains and turned off the TV. It was so nice.

I was just starting to drift in and out of awareness, when my doctor came in. We spoke briefly, but I was already on my way "out." My speech was slow and it was difficult for me to focus. Thankfully, I did not have many questions.

The doc left, the massage ended, and I drifted off to sleep. I slipped in and out of sleep for the rest of the day.

My friend came around 2:30. I cancelled our "chemo date" because I was told that the Fenergan would put me to sleep. But she still came to pick me up and take me home. I finished around 3:00 and was home by 3:30.

I ate a late lunch with my kids, then collapsed back into bed until dinnertime. After supper, I thought I would just quickly blog something, then go to sleep. ("The best laid plans...."). I had two, separate, meaningful conversations, one with Moshe and one with Y. Both talks were really worthwhile, though my talk with Y was particularly special.

The Fenergan must be wearing off, because I am starting to itch. I'm still tired....

Monday, December 1, 2008

I am anxious about the side affects. But there is no way to know how I will react.

I am trying to remain open-minded and relaxed. Easier said than done.

Nevertheless, what will be, will be.

I will also be receiving Herceptin. Tomorrow is the latest that I can continue taking Herceptin, without needing a "loading dose." My health fund, Maccabi, denied our initial request for coverage.

I am putting together an appeal, which we will send to the ombudsmen of Maccabi and the Health Ministry.

Meanwhile, some anonymous angels are taking care of me, and making sure that I get what I need.

My regular dose is 570 mg, and Herceptin comes in 440 mg bottles. So I need two bottles tomorrow. Leftover Herceptin can be used for up to 4 weeks. So, in three weeks, I will need only one more bottle. Essentially, I need 3 bottles, for every 2 treatments. Each bottle costs 11,221.85 NIS (approx $2,805). (Herceptin costs even more at this government approved pharmacy, which sells drugs that are not covered by the health funds)

Several years ago, when I had the opportunity to purchase private insurance covering medications, I decided to forego that added expense. After all, I thought, how expensive can medications be?

You asked....

Israel Time

Me & My Blog

I love my loyal readers! So for you, and you know who you are, I try to post at least 2-3 times a week.

This blog is OPEN -- so share it with anyone you think might be interested.

I want to hear what you have to say, so COMMENT FREELY!

For newcomers who know, or don't know, me:

I am a Red-Head (to know one, is to love one), Zionist (last of a dying breed), Idealist (can't help it, I still want to change the world), Enthusiastic People Person (love to meet you!), Mom (my kids are EVERYTHING to me), Wife (married to my best friend), and Cancer Survivor (read on!).

Cancer History in 3 sentences or less:

Diagnosed with DCIS (stage ZERO breast cancer) at age 39 (June 2005). Three surgeries and 2 years later (July 2007)... I became a statistical anomaly: breast cancer mysteriously metastasized to my bones, liver and lungs. 2 years later (July 2009), we discovered metastases in my brain.